Perceptions of Psychosocial Factors and the Insulin Pump

Transcription

1 Epidemiology/Health Services/Psychosocial Research O R I G I N A L A R T I C L E Perceptions of Psychosocial Factors and the Insulin Pump MARILYN D. RITHOLZ, PHD 1,2 ARLENE SMALDONE, DNSC, CPNP, CDE 3 JARIM LEE, BA 1 1 ASTRID CASTILLO, BA HOWARD WOLPERT, MD 1,2 KATIE WEINGER, EDD 1,2 OBJECTIVE The purpose of this study was to identify psychosocial issues related to diabetes, approaches to self-care, self-perceptions, and social interactions among insulin pump users with type 1 diabetes. RESEARCH DESIGN AND METHODS Adult insulin pump users participated in focus groups loosely formed on the basis of A1C level. Transcripts of focus group meetings were coded into themes by five reviewers using NVivo2 qualitative software. RESULTS Thirty adults with long-term diabetes participated in five focus groups: two with low mean SD A1C ( %), one with mid A1C ( %), and two with high A1C ( %). Three major themes were identified: impact on diabetes self-care, emotional reactions to the insulin pump, body image, and social acceptance. Participants who described the pump as a tool to meet glycemic goals also described a more active approach to diabetes and had better glycemic control; those who discussed the pump as a panacea described more passive self-care and had poorer glycemic control. Low A1C groups reported that starting the insulin pump reminded them of feelings they experienced at their initial diabetes diagnosis, whereas the high A1C groups did not report these feelings. Women were more concerned than men about body image and social acceptance with pump use. CONCLUSIONS Active participation in self-care, realistic expectations of pump use, and emotional recall of diabetes diagnosis were associated with better glycemic control. Interventions to improve diabetes management with pump use should include evaluation and discussion of active versus passive approaches to self-care, recall of diabetes diagnosis, expectations of the pump, and pump-related self-consciousness and body image concerns. The roles of these factors in optimal diabetes management warrant further investigation. The Diabetes Control and Complications Trial (1) and the U.K. Prospective Diabetes Study (2) demonstrated that microvascular complications of diabetes can be avoided or delayed if blood glucose levels are maintained as close to the normal range as possible. Over the past decade, improvements in both insulin pump technology (lighter and smaller devices, improved infusion sets, and bolus calculators) and blood glucose meters have made use of an Diabetes Care 30: , 2007 From the 1 Joslin Diabetes Center, Boston, Massachusetts; 2 Harvard Medical School, Boston, Massachusetts; and 3 Columbia University School of Nursing, New York, New York. Address correspondence and reprint requests to Katie Weinger, EdD, Behavioral and Mental Health Research, Joslin Diabetes Center, One Joslin Place, Boston, MA katie.weinger@ joslin.harvard.edu. Received for publication 18 August 2006 and accepted in revised form 29 November H.W. has received honoraria for serving on the medical advisory boards of Deltec/Smith s Medical, Disetronic/Roche Diagnostics, and Insulet and has received grant support from Medtronic Diabetes. A table elsewhere in this issue shows conventional and Système International (SI) units and conversion factors for many substances. DOI: /dc by the American Diabetes Association. The costs of publication of this article were defrayed in part by the payment of page charges. This article must therefore be hereby marked advertisement in accordance with 18 U.S.C. Section 1734 solely to indicate this fact. insulin pump as a popular mode of treatment (3). However, few studies have examined how the insulin pump affects the lives of those who wear it, particularly adults (4). A meta-analysis (4) of studies published between 1973 and 2001 on psychosocial functioning and the insulin pump revealed only seven adult studies; of these, only two were completed after publication of the Diabetes Control and Complications Trial results(5,6). Findings comparing insulin pump use to multiple daily injections varied with regard to depressive symptoms (7 9) and quality of life (5,6,8,10) but did not differ in relation to anxiety (7 9), self-esteem (9), and locus of control (7). Studies exploring subjects perceptions of advantages of insulin pumps reported increased flexibility, greater freedom, greater ease with meals, decreased physical complaints, decreased sense of physical restriction, and improved glycemic control (11 15). One recent study (3) found no difference in quality of life between insulin pump users and those using multiple daily injections. Little is known about the perceptions and experiences of adults who wear insulin pumps. For example, why some adults do well with regard to glycemic control whereas others struggle is not clear. The roles of psychosocial factors such as prior expectations, body image, and social support on treatment success among adults using the insulin pump are not well understood. We did not find any qualitative reports on adult insulin pump users. Therefore, we used focus groups with adult insulin pump users with type 1 diabetes to obtain everyday accounts of pump use and to identify psychosocial concerns and factors that may influence pump use and optimal diabetes self-care. RESEARCH DESIGN AND METHODS We conducted five focus groups (16) to explore the experiences of adult insulin pump users. We used a purposive sample of 30 adults with type 1 diabetes currently receiving treatment at the Joslin Diabetes Center. Subjects were recruited through direct mailings to 120 patients using a pump on the basis of their laboratory A1C levels, to which 60 responded. Of these, 6 participated in the pilot study, and 24 could not attend at a time when the meeting of their A1C group was held or did not meet the inclusion/exclusion criteria. Inclusion criteria included type 1 diabetes, age of years, and at least 1 year of pump use. Exclusion criteria included pregnancy, severe depression, blindness or any other condition that made survey completion difficult, and no current enrollment in any pump education programs. Groups were formed on the basis DIABETES CARE, VOLUME 30, NUMBER 3, MARCH

2 Psychosocial factors and the insulin pump of participants availability and loosely on level of blood glucose control: low A1C ( 7.0%), mid A1C ( %), and high A1C ( 8.0%). Subjects received free parking and $25.00 compensation for their time. The Committee on Human Studies at the Joslin Diabetes Center, Boston, Massachusetts, approved the protocol, and all subjects provided informed written consent. Data collection Before subject recruitment, a multidisciplinary team (endocrinologist, nurse practitioner, clinical psychologist, and research psychologist) developed focus group questions and follow-up probes derived from their clinical experiences (Table 1). Questions were broad and open-ended and addressed the experience of living with the insulin pump. Probes were used to elicit more specific information once unstructured discussion on the topic ceased. The questions and format were pilot tested and then refined before implementation. A series of five 90-min focus groups was held over a 6-month period. A clinical psychologist (M.D.R.), experienced in insulin pump therapy and conducting focus groups, facilitated all groups. An observer (A.S.) took notes and audiotaped the discussion. During group discussion, the facilitator put forth a question, and participants responded while interacting with one another. Probes were used to gain more detailed information and personal accounts. At times, participants would give advice to one another, and the group facilitator refocused discussion on sharing of experiences. After each group, the research team met and debriefed on interactions and discussions in the groups. Laboratory data and health information were obtained from medical records and demographic questionnaires. Data analysis Audiotapes were transcribed and entered into NVivo2 qualitative software (QSR International, Victoria, Australia) for analysis. Transcripts were coded independently by five team members (M.D.R., A.S., J.L., H.W., and K.W.) for identification of initial themes. Content analysis (17,18) was conducted by marking and categorizing key words and phrases to identify the psychosocial issues of relevance to the group participants. Research team members met regularly over a 1-year period to establish group consensus regarding identification and definition of Table 1 Focus group questions 1 What s it like to wear a pump? What are the best things about wearing a pump? What are the worst things about wearing a pump? Has the pump made it easier or more difficult to manage your diabetes? 2 Describe your experience learning how to use it? What was most and least helpful? 3 What information about the pump and its management do you think is important for you to know? 4 What are some of the challenges in managing your diabetes with the pump? How about carb counting? 5 Tell us about your family, friends and coworkers and the pump. 6 How has using the pump affected your eating? Let s talk about the pump and your weight. 7 Tell us about your experiences with exercise and physical activity while being on the pump. 8 What else would you like to tell about your experience learning the pump? 9 Do you ever feel discouraged or frustrated in using the pump? Please describe. 10 If you could give suggestions to people with diabetes who are considering starting on the pump, what would you suggest as the most effective ways to live with it? 11 What would you recommend to health care providers as the most effective ways to educate people to use the pump? 12 What else would you like to talk about regarding your experience living with the pump? themes and selection of examples from transcripts. We achieved investigator triangulation, a process in which more than one investigator analyzes the data (19,20) through the use of a multidisciplinary team with members experienced in the care of adults using insulin pump therapy. Further triangulation was achieved through review of the findings by experienced clinicians outside of the research team. RESULTS Thirty adults (59% female, 97% white, and 76% married; aged years) with type 1 diabetes participated in five focus groups: two low A1C ( %), one mid A1C ( %), and two high A1C ( %). Participants, on average, were highly educated ( years education), had a long duration of diabetes ( years), and had worn the pump for years. Focus groups did not differ on demographic characteristics. Three major themes were identified: impact on diabetes self-care, emotional reactions to insulin pump, and body image and social acceptance. The first two themes arose in all focus groups, but the groups differed in their discussions of these themes by level of glycemic control. Clear differences were found between low and high A1C groups, whereas the discussion of mid A1C group sometimes reflected the low A1C and sometimes the high A1C group discussions. Table 2 identifies areas of overlap of the mid A1C group. In the following, we focus on the differences between the low and high groups. For the social acceptance theme, sex rather than glucose control differences existed. Impact on diabetes self-care Responses to questions about wearing an insulin pump and managing one s diabetes focused mainly on self-care activities, conceptions or misconceptions of the pump in the treatment of diabetes, and whether group members described themselves as actively engaged or more passive in their diabetes self-care behaviors. All groups discussed the insulin pump as making self-care more convenient, expressed in terms of having greater flexibility and freedom. High A1C groups focused mainly on the convenience of the pump. Comments were more passive about their experience with the pump, e.g., describing little interest in learning more about their carbohydrate-to-insulin ratio. They seemed to have a magical notion that the pump would make diabetes disappear. For example, one participant described how she thought the pump would be a miracle and... you can do anything you want now. High A1C group participants also expressed a reluctance for performing expected self-care behaviors. They reported not valuing food records or blood glucose diaries, and they admitted to sometimes forgetting to use bolus insulin. They agreed that using the pump was more difficult than they expected. For example, when one participant stated that the pump is still a lot of hard work, another responded, people don t realize 550 DIABETES CARE, VOLUME 30, NUMBER 3, MARCH 2007

3 Ritholz and Associates Table 2 Focus group themes by level of glycemic control and sex Theme Exemplar A1C level Low Mid High Diabetes self-care Active engagement Convenience Decreased hypoglycemia Discipline when eating Fear of technology Still a lot of hard work Necessary evil Resistance to record keeping Passivity Total freedom Emotional reactions More accepting of diabetes Feeling normal * Frustration Lifts stigma of diabetes Negativity Reminiscent of initial diagnosis Return of hunger Tired of pumping Vehicle for disclosing diabetes to others Male Sex Female Body image/social acceptance Feel different Fashion challenge Increased self-consciousness Like a pager *Only 1 in 11 in the high A1C group stated this. Only 1 in 8 men stated this. that and it s frustrating... Further, they seemed to overrate their level of knowledge. As one participant noted, You know yourself better than what s written on paper... figure I have a PhD and an MD by now. High A1C groups also described fearing technology at the start of pump use and reported feeling less comfortable using it, particularly the advanced features. Furthermore, these participants expressed difficulty grasping how they could improve glucose control with the insulin pump. For example, one participant stated, I want to know these people, [with a] hemoglobin [of] 7. How do they do that? They can t be human. They re just not real. I know, as good as you can be, it just doesn t happen.... Did life end and all they do now is worry about their blood glucose 24/7 and that s it? Low A1C group members discussed the pump as a tool that required their engagement in checking glucose levels, counting carbohydrates, and using bolus insulin. They described themselves as actively involved in their diabetes self-care. Group members exchanged ways to examine blood glucose readings for trends and discussed whether, when, and how they checked their ketones. They were aware and stated that beyond convenience the true benefit of the pump was improved glycemic control:... why it s [the pump] so good is just the clinical benefits. You know, less hypoglycemia and... more stable blood sugars. They also appeared to be keenly aware that the pump was not a magic pill. Yeah, it s a necessary evil....it s the best hassle out of all the ones I could have. It extended my life the best. So as far as it goes, I honor it. The discussion among low A1C participants suggested that they were selfreflecting and had insight about the limitations of the freedom and flexibility of the pump. Their discussion also suggested that they noticed their self-care behaviors and attempted to understand them. They reported that they could not do whatever they wanted and were aware that unrestrained eating behavior was not ideal for optimal weight or glycemic control. In addition, they reported losing weight as a result of not having to treat as many hypoglycemic events, e.g., I lost a lot of weight. I was really surprised....i think before I was eating all kinds of snacks to keep from getting low or just because I was afraid of getting low, and now... I don t eat so much.... The following discussion about eating and insulin illustrates the low A1C group s selfreflection about their behaviors: Facilitator: How has the pump affected your eating? Participant 1: [Now I am] not on the tight schedule with the shot. [Before] I gotta eat; I just took the shot. Participant 2: I was in that cycle, I have to DIABETES CARE, VOLUME 30, NUMBER 3, MARCH

4 Psychosocial factors and the insulin pump eat. You know I would eat too much and then I d need more insulin...itwasjust a horrible cycle... The whole day all I would think about was food. Facilitator: So has the pump given more freedom to your eating? Participant 3: Although it [the pump] gives you a lot of spontaneity and a lot more choices, it requires as much discipline as someone without diabetes. You can t just eat everything or anything because of the consequences. Yeah, you ll be able to cover it with insulin, but you ll gain weight. But the whole thing about eating when you want, what you want, that whole thing is understated. I mean it s huge. On the other hand, high A1C participants had difficulty realizing the need for limiting their behaviors. Some discussed how they had gained weight as a result of their increased freedom. One woman stated: I ve put on weight, but also I have the flexibility of being... normal, and I m diabetic... soi ll do what I want to do, eat what I want to eat. Another responded to this statement by saying, It s not a pump issue, it s a brain issue. Furthermore, some participants discussed how they lost weight as a result of skipping meals or not using boluses of extra insulin to cover carbohydrates. Thus, the high A1C groups acknowledged that selfmonitoring and restraint were needed but were not able to utilize them to their advantage. For example, one participant responded to several group members admissions of forgetting to administer a bolus of extra insulin by saying, I think we all know what to do. It s just a matter of doing it. Emotional reactions to the pump All groups described emotional responses to the insulin pump in relation to their diabetes. Participants in the low A1C groups described increased feelings of normalcy and greater ease talking about their diabetes since using the pump. However, high A1C group members described their pump experiences in more negative terms. For example, only one female participant in the high A1C groups mentioned feeling more normal with pump use, but she discussed how feeling normal contributed to excessive eating. Both low A1C groups reported emotional reactions that included the perception of initiating pump therapy as reminiscent of how they felt when initially diagnosed with diabetes. This response did not arise in the high A1C groups. Low A1C participants described their experiences dealing with hypoglycemia before and after the insulin pump. Before the pump, the necessity of having to pay close attention to the timing of insulin injections and to eat when not hungry to avoid hypoglycemia was viewed by the group as making them feel less normal. They discussed the pump as contributing to feelings of being regular, normal, and real because of the freedom to eat at different times of the day or to skip or delay a meal without fear of hypoglycemia. For example, one woman reported that being able to eat whenever you want to eat instead of having to eat at this hour was a normalizing benefit of pump use. Another woman described how she started to feel hungry again. Participants in the low A1C groups stated that the pump helped them feel more accepting of their diabetes, less ashamed of it, and able to speak about it to others for the first time. One person said that the pump helped lift the stigma of diabetes, whereas another described the pump as making the psychological burden of diabetes lighter somehow. A female mathematics teacher described how she incorporates her insulin-tocarbohydrate ratio when teaching mathematics concepts:... so I teach them and hopefully I m changing the world. Another participant described the pump as a vehicle for talking about having diabetes: Well, I never told anybody I had diabetes until I went on the pump. That was kind of my coming out thing.... Cause I always worked in a very competitive type of environment.... And people... always expected the most out of you... bywearing the pump it at least allowed me to talk about something, something not me necessarily... In contrast, high A1C group participants spoke of being tired of the pump. They described feeling discouraged and frustrated that the pump did not fix everything and that it s still a lot of work. They described feeling burdened by having to deal with the pump on a daily basis. As one woman stated: I just get tired of it... wearing it all the time gets old. Sometimes I d like to take it off and just forget about it. Interestingly, members of the low A1C groups described their initial experiences with the pump as reminiscent of feelings they experienced when first diagnosed with diabetes. For example, one woman stated that it recalled the trauma of her initial diagnosis:... when I decided to go on the pump....ifelt... almost like a trauma that I felt when I was first diagnosed. Starting the pump apparently recalled the earlier experience of learning about diabetes self-care:... I think the psychological piece is something to really try to prepare people for ahead of time because... what you re doing is you re relearning from scratch how to manage diabetes... and if you ve had it for 20 years, and you ve been living a certain way for 20 years, even if you hate it, you re used to it, and it works for you...you have to really be ready to give that up and to change all of your habits and routines.... Body image and social acceptance All groups discussed the ways that wearing a noticeable mechanical device could affect one s feelings about his or her body image and sense of social acceptance. Men and women differed in their discussion of this issue. Female group members verbalized more about the ways the pump affected their body images than did male group members. They expressed concern about how to integrate this mechanical device with their body image, and they varied in their views of the pump regarding this concern. Their conflicts were voiced in terms of whether they saw the insulin pump as inside or outside of their bodies. They all were aware that the pump was attached to them, but some described it almost as a part of themselves, whereas others had more trouble integrating the pump with their body integrity. For example, one woman stated: I don t even think of it as separate. I don t want to say it s part of me, but it is. Another woman said: I m so against something on the outside of me... You just feel different. Some female participants discussed feeling an increased sense of selfconsciousness from wearing the pump in public. They expressed how the pump could make them feel different in relation to their bodies, wearing clothing, and social comfort in public settings. They seemed more concerned than the men about being able to wear the pump comfortably, stylishly, and unobtrusively, particularly when wearing dresses and bathing suits. One woman described the pump as a fashion challenge : Sometimes I think it s easier. A lot of times, I don t like it. I try and hide it.... I very 552 DIABETES CARE, VOLUME 30, NUMBER 3, MARCH 2007

5 rarely wear it outside of my clothing.... I m very self-conscious with it. At times, I think that in that aspect shots were easier... On the other hand, most of the men appeared less bothered by social acceptance in relation to the pump. They stated that the changing times and greater use of technological devices made them less selfconscious and more able to wear the pump without fearing social ostracism or discomfort. They felt more at ease with the pump as just another device, no different than a pager, which could be worn in public. However, not all men felt this way, and one man also expressed his feeling of being different in public:... When I go to a place and I am among people I don t know it raises your awareness that people may be looking at you more than usual. And it makes you feel uncomfortable, but not to the point where it is something you would consider giving up, but it makes you feel a little more different than normal. CONCLUSIONS In this study, focus groups provided a qualitative method for obtaining everyday experiences of living with an insulin pump for individuals with type 1 diabetes. From these discussions, three themes were identified: impact on diabetes self-care, emotional reactions to the insulin pump, and body image and social acceptance. Differences were observed among glycemic control groups regarding pump expectations, approaches to pump use, and emotional reactions to the pump. Sex differences were found regarding body image and social acceptance in insulin pump use. Participants who expected the pump to serve as a tool rather than a panacea had a more active approach to their diabetes care and better glycemic control. Their active participation included an understanding that the pump was a technological device making life with diabetes more flexible and convenient but not a vehicle for total freedom from diabetes. In contrast, the high A1C group expressed unrealistic expectations and a more passive model for self-care. They expected the pump to be a miracle that would not require close attention to selfcare behaviors and that allowed them to do whatever they wanted, particularly with regard to eating. This finding on expectations of the pump is consistent with that reported in adolescents (21). Before initiating pump therapy, health care providers need to assess patients expectations of the pump, dispel magical beliefs and attributions, and review educational materials to ensure that the pump is not portrayed as allowing total dietary freedom. Further, pump companies should monitor marketing materials to prevent 1) the promotion of unrealistic expectations of the pump and 2) the notion of total dietary freedom. Initial and ongoing pump treatment should reinforce the idea of the pump as a tool that one must learn to use and master. The low A1C groups described greater comfort with using advanced pump features, the ability to observe and learn from their behaviors, and an awareness of the need for self-discipline and self-regulation. Self-efficacy and selfregulation may be useful psychological constructs for understanding the ways one addresses self-care (22,23). However, only two studies have investigated selfefficacy and the insulin pump with adolescents (24,25), and no studies on selfregulation and the insulin pump have been reported. Important differences in self-efficacy and other psychological constructs may exist, and future research needs to quantitatively differentiate active versus passive approaches to diabetes self-care to better understand the observed qualitative differences. The description of how starting the insulin pump was reminiscent of the feelings experienced at initial diagnosis of diabetes has not previously been reported in the literature. This experience of the recall of diabetes diagnosis may be partially explained by study participants long duration of diabetes and many years of insulin injection use. If so, transition to an insulin pump might be more stressful for patients such as these compared with those with shorter diabetes duration. However, no differences in diabetes duration existed among our focus groups, and it is noteworthy that those in the high A1C group did not report this experience. One explanation may be that the high A1C group s passive approach entailed continuing to think about diabetes in the same fashion as when they were originally diagnosed. Starting the pump was not a relearning experience and did not recall the feelings of having to face diabetes in learning to take care of oneself. Further research needs to address whether recall of diabetes diagnosis during insulin pump initiation interacts with self-care and whether discussion of coping with these memories Ritholz and Associates can contribute to more effective insulin pump use. Women in our study were more concerned than men about perceived body images and social acceptance with regard to using the insulin pump. Prior research has identified increased self-consciousness (26), greater body dissatisfaction (27), and decreased body esteem (28) for women without diabetes and body image concerns for younger women with diabetes using the insulin pump (29). It is not surprising that women in our study were more self-conscious about how they looked in public when wearing an insulin pump. What was unexpected was the existence of both feelings of normalcy and feelings of difference in these subjects in relation to the pump. Low A1C group participants discussed their increased sense of normalcy with regard to diabetes as a result of pump use in terms of having more freedom about their eating schedule and a decreased fear of hypoglycemia. However, this feeling of normalcy did not extend to their body image and public appearance. The public image of being noticed with an insulin pump caused feelings of being different and less acceptable. This finding differs from those from a previous study that found adolescents were not more self-conscious as a result of wearing the pump (21). However, our results are consistent with that study s finding that female adolescents reported concerns about fashion inconveniences. Further research is needed to address the impact of self-consciousness and body image on diabetes self-care for people managing the pump and to investigate the effects of age and sex on these factors. There are several limitations to this study. Focus groups may inhibit expression of differing viewpoints, implying greater consensus of viewpoints than is actual. Intergroup comparisons may be related to differences in group dynamics rather than real differences in attitudes or experiences (30,31). Although our subjects varied in age, the sample was mainly white, educated insulin pump users with type 1 diabetes. Thus, these results can be generalized to similar populations but need confirmation in other ethnic and socioeconomic groups. Further research is necessary to understand factors associated with active engagement in diabetes self-care. This understanding is particularly needed as more and newer technological devices for the treatment of diabetes emerge. There is a danger that when given new technolo- DIABETES CARE, VOLUME 30, NUMBER 3, MARCH

6 Psychosocial factors and the insulin pump gies, patients may not develop a sense of their active role and responsibility in their own self-care. This can only lead to negative feelings and disappointments rather than further empowerment of the patient and optimal diabetes management. Findings of this qualitative study suggest that interventions to improve diabetes management with pump use should include evaluation and discussion of active versus passive approaches to self-care, recall of diabetes diagnosis, expectations of the pump, and pump-related self-consciousness and body image concerns. The roles of these factors in optimal diabetes management warrant further investigation. Acknowledgments This work was supported by National Institutes of Health (NIH) Grant R01 DK60115 (to K.W.), in part by NIH Training Grant DK07260 (to A.S.), by Diabetes and Endocrinology Research Core NIH Grant P30 DK36836, and by an unrestricted educational grant from Animas Corporation (to H.W.). 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